An update on Amari

As already explained, this column is geared towards raising awareness about children with special needs by highlighting my son Amari's journey. It has been a while since I have given an update on him.

Amari is doing very well; language development is evident as he is talking more each day. He can verbally identify almost everything and is putting words together and making sentences. He is still not speaking at age level but definitely learning at that level. The education strategy of developmental therapy and of having him in a small classroom supported by a shadow is bearing much fruit, as he is still learning at age level with excellent grades. Based on his progress we are also exploring the possibility of mainstreaming him.

A very big milestone is that he is now chewing his meals. We are so excited. I feel like stopping everybody and telling them what and what he is eating. Some time ago I had written that we have had to puree his food up to maybe age three. Eventually he graduated to crushed food. Then all of a sudden one day he just started to chew. It had been explained to us earlier that some micro preemies have challenges with chewing and swallowing, either due to premature development of the mouth and throat function, or due to the several months of feeding them through tubes while hospitalised after birth. This is one hurdle we are happy to report he has crossed. This is one of those simple things that most people take for granted, but it's a huge deal in our house.

We are currently having a challenge in terms of his shadow/teaching assistant. As I have pointed out in previous articles, Amari needed a shadow to assist him in school and I strongly advocate for shadows, but it has to be done the right way for it to work. We used his nanny to shadow him to reduce cost and she has done an amazing job, but I believe he is outgrowing the current arrangement. Because of her original role, she tends to coddle him and maybe overcompensate a bit at school. This we believe will hold him back and hamper his full development. An effective shadow knows that if a child needs her for 10 different things at school, the role is to offer support while weaning that child from most of these dependencies. If not, the child will always be co-dependent and never truly attain full independence. Additionally, as he gets older and the curriculum gets more advanced, there is a need for a trained professional who has the skill set to impart the knowledge in the most effective way. I salute his nanny for taking on the challenge, as she has helped him tremendously throughout this school year and made his experience so much easier.

So now we are facing the challenge of financing a full-time shadow. We are exploring the possibility of hiring a shadow and sharing with another student in his class as this would cut the cost in half. This may not work, as depending on the needs of each child it may be difficult to shadow both. It is a common practice for children with special needs, but is dependent on the special needs of the specific children.

Medically Amari has crossed many barriers; we had hoped to cross the last barrier and wean him off his anti-seizure meds this year as we were not sure if it was impacting his development, but mainly because he has been seizure-free for two years. A recent EEG showed that there are still seizure discharges, thus leaving him on meds for an additional year, at which time we will repeat the EEG. This was difficult to accept at first, but we are trusting God for healing as Amari has already overcome so many medical challenges. We give thanks that there are medications to control it. The glass is half-full.

Overall Amari is doing extremely well, loving school and learning nicely. He enjoys playing with his friends and absolutely loves books and doing educational tasks on his tablet. Most importantly, he has so much joy and is a real inspiration to his parents. The reality is that the intervention strategies to help him are expensive, but we try our best to ensure he has what he needs. There are many children in Jamaica with special needs who have little or no access to resources that will make a big difference in their eventual outcome. I use my son as an example to show the difference early intervention can make. Ideally this should be the experience of all children with special needs. Please join me in advocacy in whatever way you can.

Sara, mom to four-year-old Amari, is an advocate for children with developmental delays. Amari was born three months early at one pound, and was hospitalised for three-and-a-half months after birth. E-mail her at francis.m.sara@gmail.com.

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